End of Life Issues
Related: About this forumI am new to this so please bear with me....
I just got my diagnosis today and it is a death sentence. I watched my mom die within a year or so after she received her diagnosis. I am determined NOT to die that way. However, dying is no big deal to me and I am not in the least bothered by it. However, what is looming over me with a heavy heart is how do I tell my wife and family? I have thought about divorcing and just go away so as not to burden them with the cost in time and money and most of all their own energies and emotions. If I could just leave and no one care that would be the way I would want it.
Is this normal to think this way? I do not want to burden anyone and especially not my family. I just want to go alone, sitting on a porch watching the world around and just decide when enough is enough and be done with it all. Is that selfish of me? I am a bit confused right now on a direction to go. I just know I do not want to go in a hospital, lying in a coma, and they having to pull a tube from my stomach so I would slowly starve to death. No, that is not going to happen. I just worry about my wife and family. I don't want them to hurt.
This sort of post sucks I know. Most of you probably think I suck because of how I would like to go. That is fine.
True Dough
(20,241 posts)You sound stoic about it. I make no judgement in regards to your preference in ending your life. That is, and ought to be, your choice.
While I admire your resolve and your determination to minimize the pain your family feels, I would advise you to share your predicament with your wife, at the very least. Let her help you decide the best course of action. While I don't know her, she may be much more emotional about this situation than you are. That's okay. People handle grief in different ways. Be patient with her and give her a bit of time to come to grips with this grim news. She will surely appreciate knowing rather than have you simply up and disappear.
Best wishes.
BigmanPigman
(52,241 posts)but I do not know how to do DU email to you specifically. Maybe you can DU email me?
CaliforniaPeggy
(152,069 posts)This will bring up the DU mail form for you to talk to him.
I hope this will help you!
BigmanPigman
(52,241 posts)You wouldn't happen to know how to link a DU post by any chance. I have tried to link info from a post from earlier today about the Dutch intel on the moron and can't do anything but copy, share, or select all and none of them work. I tried to share the info since I know where it is but it is a lesson in frustration with my touchscreen tablet.
CaliforniaPeggy
(152,069 posts)BigmanPigman
(52,241 posts)WOW-Dutch Intell Infiltrated Russain Hacker Group-Witnessed-How Russians Attacked US institutions.
Earlier someone else posted it from the original and was able to do it successfully. I put my finger on the screen on the Twitter messages, on the print, etc. and it never says share image, or copy link, download image, etc. anywhere on my screen.
CaliforniaPeggy
(152,069 posts)CaliforniaPeggy
(152,069 posts)The way you do this is: find the topic and then highlight the https at the top of the page. Basically you need to copy and then paste the link into wherever you want it. That's what I just did.
Hope this helps!
MFM008
(20,000 posts)On a perfect fall day
My dad had some sort of cardiac event...we never knew
What.
My mom called a family friend to take him to local military hospital....we also don't know why an ambulance was never called.
The last moments my parents spent together was sitting on the front porch swing , where he liked to sit and watch the birds among the lilac and rhodie bushes.
He got into the car and never said a word.
Collapsed and passed away as soon as he got to the hospital.
If there's a heaven, I know some kind of porch and garden are involved.
Dale Neiburg
(751 posts)That would hurt your family more mthan dealing with your death. They wouldn't have the closure they need for their own healing.
My longer-term advice would be to look into hospice care. Many offer both inpatient and home care options. (A few are not good -- get recommendations.)
rogerballard
(3,835 posts)I am new to this so please bare/bear with me. What diagnoses did you and your Mom have?
jimmil
(632 posts)It is the same thing as Alzheimers disease but a different part of the brain, the small blood vessels, are attacked. It was discovered during a routine MRI I have checking if the brain tumor was killed by the gamma knife procedure I had. That did not work and the tumor continues to grow which adds a factor of suckiness to this whole thing. The amaloidosis is kind of a tradition in my family on my mother's side. Two of her brothers died of it while her sister and niece both died of Alzheimer disease. The doctors said each of my siblings has a 50% chance of inheriting the disease. I won I guess.
I realize packing up and leaving is a pretty shitty way to go about things. I also know a hospice sucks hugely. I will not get that far into the disease. I would really like it if someone (pref doctor) could make sure I am cognizant enough to understand when it is tie to go and let me go on my own terms. Yes, I do prefer suicide to laying in a bed with diapers on, a feeding tube shoved down my throat, and someone checking every 30 minutes to see if I freed up the bed.
So, I understand everything that is going on and no doubt will for quite a while as the disease can have a slow progression. I also know how I want to die and when in the disease progression. I just don't know how to tell my wife. I really want her to go about her everyday things and not worry about me. I never want (nor will I) to become a burden to her.
I am not looking for sympathy or anything. I should have died 50 years ago so whatever time I have had since then is bonus baby. I've also had a great life and been very fortunate no doubt about it. I am happy for what I have done, happy for where I am now, and I look forward to the future. I am fine except how do I tell the wife and family and have them feel the same way I do? I'm good.
radical noodle
(8,578 posts)from the Jackalope. His wife was diagnosed with a terminal disease and she knew how she wanted to go. They worked together to make it as lovely an ending as I've ever seen. Maybe that will help, and you could also share his posts with your wife.
The_jackalope
(1,660 posts)Last edited Sat Jan 27, 2018, 07:37 PM - Edit history (4)
First and foremost, everything you're thinking right now is OK. This is not a normal situation, and there are no "right" thoughts about it. Think any way you need to, and please try to be as gentle with yourself as you can.
My most important advice is to get your local hospice folks involved right f'ing now. There may be an assisted death program you can access. If so it would be by far the best option. If it isn't available where you live, you may be able to travel to a place where you can access one. The hospice angels will know the ropes. They've seen it all, and they will guide you compassionately. Trust them.
Also, in my experience home hospice doesn't suck if you have an endgame mapped out. I don't have any experience with institutional hospice, so that may be a different kettle of fish.
Self-administered suicide endings are dodgy from a couple of points of view: there are potentially harsh legal consequences for anyone who even remotely assists you (like buying you a book on the subject); and access to sure and painless techniques is difficult.
The simplest and most certain technique is helium used in a plastic bag hood. Unfortunately, the party balloon helium manufacturers have gotten wise to this use, and many are adulterating their helium with oxygen or air. That raises the risk of failure, and trust me, the only thing worse than a suicide is a botched attempt that leaves you brain-damaged. Pure commercial nitrogen or non-balloon helium would both be good, but I found them impossible to get for my wife without leaving a paper trail.
Yes, I assisted her in two consecutive attempts, and voluntarily accepted the legal risks. We got so fucking lucky that the failures didn't cause even worse problems for both of us, and still left her eligible for medical assistance - which is what I should have talked her into in the first place...
If there is no legal medical program where you are, and you can't get 100% helium (or nitrogen) entirely on your own, the next on the list is pills and alcohol. But you'd be amazed how much serious medication the body can tolerate. It's actually fairly hard to calculate a minimum fatal dose for most of the pain meds that hospice will provide (i.e. hydromorphone.) We found that out the hard way too.
Whatever you decide, DON'T try ligature carotid compression. It's a baaaaad idea. You can imagine how I know. I still have strong trauma flashbacks from sitting with her through that one - and it didn't work either.
My next-best choice would be VSED - voluntarily stop eating and drinking. A friend's wife who had ALS used that, and it worked, but it took several weeks. And it was hard, especially at the beginning. My 93 year old mother just used that technique in her retirement home, as did her mother before her. So it works, but it's tough and you really need to have a partner to keep you on track.
Lastly - DO NOT BAIL ON YOUR FAMILY! Trust me, that would be the single worst thing you could do - it would be far harder on them than your death alone would be. Suicide is not selfish, but cutting your family off from your last days IS. Please don't. They have earned the right to be involved.
If you have any questions send me DU mail. I'm ready to talk about any and all of it. You have my most profound sympathy.
jimmil
(632 posts)You have given me a lot to think about. You are all stars!
Lucid Dreamer
(589 posts)jimmil, it's been a year since you posted here, but I see you are still active. I hope that is good news. Anything you can share with us?
jimmil
(632 posts)The drugs I am taking seem to slow the process of my brain being attacked by amyloids. A second round of the gamma knife has stopped the tumor from growing in my brain although my hearing in the right ear is totally gone and 50% in the left. Balance is kinda OK with me falling only every so often. Short term memory is for shit but I can recall many minute details for 65 years ago. It is weird when you can recall the first time you were able to crawl out of your crib all by yourself but haven't a clue what you watched so intently on TV last night.
I have discussed this with the wife. I am resolute that I am not going to be a drooling mass of flesh in a hospital in the end. I have told my family no life saving measures what so ever. When God says it's time then it is time.
Lucid Dreamer
(589 posts)Back in the early 90s my wife had a similar discussion. Neither of us wanted prolonged "extraordinary" measures, tubes and wires, prolonging our lives in some sort of vegetative state. We had living wills / advanced directives written out. Copies of those are in the hands of our medical providers, local hospitals, family members. There are also copies in each of our vehicles. My wife even made an audio tape to support the written docs.
Even with all that there is a possibility that the "health" providers will balk at the end, but we've done what we could.
In addition to my wife I had a personal conversation w/ my son about how to know when I "want to go." A few simple puzzles to present to me as a "test" to see if my mind was working. If I didn't answer correctly it meant either I was not mentally aware enough that I wanted to stick around OR I was aware and my failure to answer was an intentional signal "goodbye."
jimmil
(632 posts)I will add more measures to make sure the family knows when it is time to pass. I've never been scared of dying nor cared if I did. It's part of life. I just want my family to know it is right to let me go. Amyloidosis can take a year, five years, who knows.